Written by Karen George, Trustee, Thyroid Trust

In September the Thyroid Trust were approached by NICE (the National Institute for Health and Care Excellence) with an invitation to attend a new Voluntary and Community Sector (VCS) Forum being established by NICE. The inaugural meeting took place on 19th October and I attended on behalf of the Thyroid Trust.

The forum was led by NICE’s CEO, Sam Roberts, supported by Jenna Dilkes, Associate Director within the NICE Centre for Health Technology Evaluation, and Victoria Thomas, head of the public involvement team. Over 70 charities and patient organisations were in attendance, from a diverse range of organisations across the voluntary and community sector. The meeting explored:

Imagine waking up one day to realise you no longer recognise yourself in the mirror, your relationships are falling apart, you feel strange pains throughout your body and you feel a deep, heavy emptiness in your chest that nothing will shift.

​If you’re someone who has thyroid eye disease, you’ll know exactly what I mean. If you’re someone that knows someone that’s had it, you might know what I mean, but if you’re neither, the chances are you won’t. 

And that’s understandable, as it’s a rare disease.